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Pain moving to joints w/ antibiotics-Is this the right course of action?

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Lyme Disease
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ConcernedMom22
Regular Member
Joined : Dec 2012
Posts : 62
Posted 12/7/2012 11:02 PM (GMT -7)
I sure hope we're taking the right course of action by going ahead with antibiotics....my daughter just started Amoxycillin yesterday morning. Her pain hasn't typically been in her joints but instead has been a deep pain in the upper and lower legs and more recently, in the arms. Now tonight she said the pain is worse (we heard about herxing and expected that) and that it has moved to include her ankles and her hips. The movement to the joints is the part that worries me. I understand this stuff sorta digs deeper when you go after it and that it can head for the joints and even the eye sockets. Makes sense but it's got me wondering if antibiotic is the way to go. Any input?

ConcernedMom

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Summer3
Veteran Member
Joined : Nov 2011
Posts : 1020
Posted 12/8/2012 5:39 AM (GMT -7)
I know this sounds counter intuitive, but with Lyme, an increase of pain or new symptoms showing up after beginning a new treatment is almost always from herxing.

The only other things you want to watch out for are allergic reactions which usually include hives, itching, swelling etc. and also a drug reaction. In my experience, I have found that over 90% of the time my increases or new symptoms that come are due to herxing.

Are you seeing a LLMD? How old is your daughter? A lot of LLMD's use very high dose amoxicillin (sometimes with probenecid to raise blood levels further) along with a macrolide and cyst-buster to go after all 3 forms of Lyme.
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Deejavu
Veteran Member
Joined : Aug 2005
Posts : 4667
Posted 12/8/2012 7:00 AM (GMT -7)
Hi Concerned Mom,

Toxins are the cause of pain.  Even if one didn't take abx or any other protocol lyme bacteria die off by themselves (that is what our bodies do automatically).   Is your daughter detoxing at all?  If not, in the sticky thread called "New to Lyme?  Start Here" is a section on detoxing with instructions.

As far as the detox baths, I recommend that when a person first starts them (and they can be children), always start slow and make sure the water temperature is warm not hot and drink lots of water during the bath.  Dry skin brushing really helps as well as the detox foot baths.  It's normal to feel worse after the first bath but the more baths a person takes the better that person feels because they are getting toxins out of their body.

As far as using abx, I can't tell you if that is right or wrong.  I do recommend reading books to learn about chronic lyme so you know all your options.  I personally recommend:

Stephen Buhner's "Healing Lyme" (amazon.com) and

Dr. David Jernigan "Beating Lyme Disease" (his book can be found on www.hansacenter.com)

Hope this helps,

Denise

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opugirl
Forum Moderator
Joined : Nov 2012
Posts : 3922
Posted 12/8/2012 8:10 AM (GMT -7)
Concerned Mom,

I'm sort of in the same spot as your daughter as in beginning of treatment. After 3 weeks of abx my joints stopped aching and started cracking...a lot. Think about it this way...lets say you've had a UTI or a sinus infection before. When I've been put on abx for stuff like that I don't feel any different, maybe tired..after a few days you feel better. No joints ache or random pains like that. It only hurts because its working (as long as it doesn't hurt too much). Herbs work because they have the same antibiotic properties so I wouldn't expect too much of a gentler path but lots have said that it isn't as rough, so who knows. I just finished reading the book Deejavu suggested Stephen Buhner's "Healing Lyme" Its great. What i love about it is in the back, he cites like 30 pages worth of scientific articles- and the book is very straightfwd, easy read. He suggests using Smilax herb (I think) for herx's.
Ironically, the author is best known for herbal use and being somewhat anti -abx. But in the book, he states that though he is well known for herbals, that their has been some miraculous recoveries of people with lyme using abx. He also says that you can use his protocol simultaneously with abx.
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ConcernedMom22
Regular Member
Joined : Dec 2012
Posts : 62
Posted 12/8/2012 11:56 AM (GMT -7)
Thank you all for the helpful information. I will definitely check out the recommended books. I want to correct an error in my initial post. My daughter was started on doxycycline (100 mg 2x daily) not amoxicillin. (Amoxicillin was what was first discussed and I lapsed back to that thinking.)My daughter is 13. No we haven't found a LLMD yet as her diagnosis was just confirmed this past week. On Friday I started finding some LLMDs in MI and I plan to start calling on Monday.It was her GP that started the doxycycline. He thought it was best to start something while we find a specialist becuase she was starting to have more headaches and diziness. I think her immune system was knocked down by just having the chicken pox, that the Lyme symptoms suddenly became quite a bit worse.

It's reasurring to hear it's not necessarily a bad thing that the location of the pain is changing with starting antibioitics. I'm just so leary about antibiotics anyway and have always tried to avoid them but my reading seemed to point to that being the best course of action to try first. And frankly, I was scared and my daughter just wanted to get started with something. I'm seeing posts of a few folks who had success by following anitbiotics with herbal/supplemental type protocols. A person can lose herself in all this information! I'm sure you all know what I mean.

In the meantime, yes, we are focusing on detoxing with Epsom Salt and peroxide, dry skin brushing, lots of lemon water, and detox teas. We also continue to focus on healthy food (organic as much as possible) low in sugars, gluten and dairy. She's using probiotics too.

I can't say enough about how much I appreciate all the helpful guidance and support I've received at this website. Thanks.

ConcernedMom
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ConcernedMom22
Regular Member
Joined : Dec 2012
Posts : 62
Posted 12/8/2012 11:58 AM (GMT -7)
Summer3-I forgot to ask, what is a macrolid? Also what's a cyst buster (in terms of lyme)? Thanks.
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Mystery Illness
Veteran Member
Joined : Dec 2011
Posts : 767
Posted 12/8/2012 6:14 PM (GMT -7)
Alkaseltzer Gold is really helpful for me. It's hard to find; I order it online. When I'm in the midst of a very bad flare, I do all of these things at once and it takes the edge off: Epsom saly, hydrogen peroxide Foot bath, drink Alkaseltzer Gold during it, wait about 15 minutes and then drink TONS of water, take a Benadryl (some say it helps w/ herxing), and go to bed. That combination just seems to help me.
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justascarf2
Regular Member
Joined : Oct 2012
Posts : 128
Posted 12/8/2012 8:36 PM (GMT -7)
Hey Concerned Mom -
I too mostly had muscle pains. When I started abx, I started on minocycline. It was a low dose and after about 2 days I was getting dizzier and my hips were killing me. It got worse before it got better but the fact that it was in my hips and fingers was very different for me. I ended up struggling to walk up and down stairs it was so painful and I was so stiff. I believe that the die off was causing a detoxing issue for me. It took me quite a while to figure this out. What you all are doing is wonderful. For me, one of my quick go tos that helps me when I'm herxing is activated charcoal. I take two capsules with lots of water. For me within 2 hours my symptoms improve giving me relief. It doesn't get rid of everything but it absorbs a bunch of the toxins in your gutt and for me lessens the symptoms. Hope you all can find some relief.
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Summer3
Veteran Member
Joined : Nov 2011
Posts : 1020
Posted 12/8/2012 10:44 PM (GMT -7)
A macrolide is a medication like zithromax or biaxin that goes after the intracellular form of Lyme. A cyst-buster goes after the Lyme cysts. Usually people use tindamax, flagyl or grapefruit seed extract for that.

If your daughter has a new case of Lyme, Doxy may be all she needs. If she has chronic Lyme, she will most likely need a lot more than a low dose of doxy. That's when you NEED to find a LLMD because most doctors don't have enough knowledge to adequately treat these infections. A lot of them don't even believe in chronic Lyme disease.
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ConcernedMom22
Regular Member
Joined : Dec 2012
Posts : 62
Posted 12/9/2012 8:17 AM (GMT -7)
Thanks for the detoxing ideas. Much appreciated. Summer, you asked about whether it's chronic or or not...my daughter's symptoms started when she was about 8 and she's now 13 and was just diagnosed last week. She is literally the ONLY person her GP has ever diagnosed with Lyme and he's probably been practicing for 20 years or more. Every summer we do a lot of camping and the year I believe she contracted it, we were traveling for a month straight tent camping in the national parks out west. Also around that time there were problems with ticks in our yard. (They've just become more problematic in MI in the past several years but we're told our area isn't known to be a Lyme area yet.) The bottom line is that we don't know exactly how or when she got this nasty stuff but her pain started at about 8 years old and around that same time she also went through a period of severe headaches that resulted in a CAT scan and no conclusions as to the problem. As for the muscle pain, we also were told (we got the smile too) that it was growing pains. After she recently had the chicken pox her symptoms have really seemed to flare with diziness being her newest symptom.

On Monday I'll be starting to make calls now that we have numbers for some LLMDs in MI. There are only a few and I'm told many docs won't see youth so I'm kinda anxious about that.In the meantime, I'm hoping we're doing the right thing by hainv her go ahead and start the doxycycline as recommended by her GP. He thought we ought to do something while we waited to see someone who knows about Lyme. He referred us to a contagious disease specialist and we have an appointment on the 18th that we'll probably only keep if we can't find an LLMD.

I'm guessing her current dose of antibiotics (100 mg 2x daily) isn't adequate because she only had herxing for a couple days and then yesterday said she felt the best she has in weeks. The rest of the pain is the same but the headache and dizziness are gone. Sure wish we had a good doc already. Wish us luck finding one!

If anything I'm saying seems off kilter I do appreciate feedback cuz I'm new to this mess and need all the direction I can get.

You all are a real lifeline for me already. Thanks.
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Traveler
Elite Member
Joined : May 2007
Posts : 36318
Posted 12/9/2012 10:12 AM (GMT -7)
There's a couple of things that I would like to suggest - if she's having muscle spasms/twitches/cramps - be sure she's not getting any lemon juice or lemon solids in foods or in her water. Also be sure that she's not eating/drinking any fermented/pickled foods/drinks. These things will all increase the amount of muscle issues that she's having as well as possibly increase the severity of those symptoms.

Is she experiencing inflammation in her joints? Lyme is an inflammatory disease, so it wouldn't be surprising. I use turmeric to help with the inflammation that I have (& I have a lot! eyes Ugh!). Although you will want to start off slowly and with small amounts, as a guide, I use 1500 mgs of turmeric three times a day to help control my inflammation.

I would suggest that you check to be sure there won't be any interactions with her other meds/supplements, but it's not likely there will be. You can find most herbs & drugs on this site. Look for the tab for their interaction checker at the top of the page.
www.drugdigest.org/wps/portal/ddigest
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ConcernedMom22
Regular Member
Joined : Dec 2012
Posts : 62
Posted 12/9/2012 10:48 AM (GMT -7)
My daughter doesn't have muscle spasms or cramps she simply has pain and weakness. Until recently this has been her most consistent symptom and it's mostly in her legs. Only recently have her arms also started to feel week and at times like they tingle. I'm thinking the muscle weakness seems to match up to some the co-infections so it may be more about that. I appreciate the heads up about lemon juice. I'd been putting it in her water and somehow I was questioning that and your message validates that hunch.
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Traveler
Elite Member
Joined : May 2007
Posts : 36318
Posted 12/9/2012 11:37 AM (GMT -7)
The lemon juice in the water is good for those who are experiencing the muscle issues. It helps to keep the body a bit more alkaline rather than acidic.

The tingling is a sign that it's in her nervous system. Not surprising since she's had the infection for so long though. I'm actually surprised that she doesn't have more and/or more severe symptoms.
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ConcernedMom22
Regular Member
Joined : Dec 2012
Posts : 62
Posted 12/9/2012 2:18 PM (GMT -7)
Yeah, based on what I'm hearing I'm surprised too. She had just started with the headaches again. She does have a terrible problem with memory and spaciness and it's something her coaches and teachers have talked more and more about. This past year was the first time one of her coaches said maybe she needed to be on medication for ADD. I also see the anxiety quite a bit although her father tends to struggle with anxiety quite a bit too so I think some of that is just in her genes. Other than that we've just seen her become increasingly tired and she began to show some depression but that seemed to be mostly about being tired of the leg pain and not wanting to do the things she usually enjoys.

I guess I misunderstood about the lemon juice thing and appreciate the explanation. I'll look into that some more.
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TW92109
New Member
Joined : Dec 2012
Posts : 3
Posted 12/10/2012 4:03 PM (GMT -7)
The exact same thing is happening to me right now. I suspect I've had Lyme for many years - started antibiotics (500 mg 2x day) about 6 weeks ago and I'm now having migrating pain where I've never really had it before. My shoulder will ache all day long. I'll get a sharp pain in my elbow that will make me jump out of my chair. Ankles and feet hurt much worse and hips and back is worse than ever. I'm getting ready to add the 3rd of 4 meds and I'm scared to do it!

I know I need to focus on detox. It shouldn't be hard for me because I've spent years detoxing my home (water/dishes/pans, cleaners, body and beauty products, etc.) and I know what I must do but I have no energy and now that I finally know what's wrong with me I feel like I don't have any fight left (after 7 years of being sick and 4 yrs of fighting and detoxing). I feel like crap.
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ConcernedMom22
Regular Member
Joined : Dec 2012
Posts : 62
Posted 12/10/2012 5:18 PM (GMT -7)
TW-I can't say that I understand what you're going through with the physical pain bc I'm on this blog bc my daughter is struggling with this nasty bacteria, not me. I just wanted to say that my heart goes out to you though. I'm learning about lyme myself since my daughter was just diagnosed but I have heard others say that getting worse in some ways means you're getting better (herxing) so in some small way, hopefully you can take heart in that.

Do you have a bathtub? I know for my daughter it is SO helpful. When she's completely whipped she does some exfoliating and then gets into a good epsom salt bath. (And thanks to some helpful advice received in this website, she adds peroxide on occasion for a little boost.) This activity doesn't take much energy but does seem to help her maybe as much for the comfort as for the detox and slight pain relief.

Just hang in there. You must have some hope in there or you wouldn't be reaching out. You'll get through this!!!
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